Will I be able to get pregnant? How will the hypopara affect the pregnancy and birth? Will I be able to make my own birth plan? Can I breastfeed?

Living with hypopara is challenging, especially as it often affects young women of childbearing age. So this year we decided to focus our 2014 ‘Living with hypopara’ campaign for World Hypoparathyroidism Awareness Day on how hypopara affects pregnancy, birth, and breastfeeding.

We asked four young women to talk about their experience of pregnancy and childbirth. Could they do it? They replied unanimously – “Yes we can!”

Blaithin’s story

Blaithin has permanent hypopara following surgery for papillary thyroid cancer in 2002. She has since had two children, one born in the UK and one in Ireland. Her meds did need to be increased throughout the pregnancy and throughout the breastfeeding period on both occasions, but one side-effect of the pregnancy was that her hypopara symptoms like pins and needles, tingling, and muscle cramps virtually disappeared. After the first birth, she says: ”My Endo said that it wasn’t known whether the levels of alfacalcidol that would transmit to the baby in the breast milk would increase the baby’s calcium levels too much, so we came up with a plan to test the baby’s levels a few weeks after I started breastfeeding.” Read Blaithins' full story....

Isabel’s story

Isabel has had permanent post-surgical hypopara following a total thyroidectomy due to thyroid cancer in 1988. As a result of her long-term medication, she also has stage 3 chronic kidney disease. She prepared thoroughly for her pregnancy and consulted her doctors beforehand. Her calcium, alfacalcidol and thyroxine were steadily increased from the second trimester. Her pregnancy went well, and her kidney function became the best it had been in over 10 years, but at week 38 her blood pressure shot up and she was induced at 40 weeks. Baby Rafael was born by C-section. She says: “Postpartum, my calcium levels continued to rise quite rapidly so my medication was reduced. It was very difficult for me to be hypercalcaemic and to be breastfeeding as the breastfeeding hormone was causing my calcium levels to rise. I persevered though and it took about three months for my calcium levels to stabilise. My baby is five months old now and I am still exclusively breastfeeding.”

Gillian was diagnosed with hypopara in July 2011 after a total thyroidectomy for Graves’ disease. She became pregnant in 2012. Her calcium levels remained stable and increased slightly but were never a cause for concern. She gave birth to a baby boy, Duncan, and is still breastfeeding 15 months after the birth! She has three older children who were born before she acquired hypopara and says “hypopara didn’t make the experience of pregnancy and birth any worse for me than my earlier three births. Don’t let it put you off trying to conceive!!”

Alyson was diagnosed with hypopara in February 2007 following a full thyroidectomy for Graves’ disease. Her hypopara did not cause any problems during pregnancy or labour but she was monitored carefully throughout. At eight weeks following the birth, her calcium had become very high and she ended up stopping all medication for around four months, but very slowly symptoms returned. She is now back on medication. She breastfeed and was concerned that the calcium medication could be an issue but was assured that this was not going to be a problem and is still going nearly a year later. Alyson says: “Whilst I have received great care, I think that it is vital that GPs and midwives are made more aware of this condition and how potentially serious it can be. I also think there should be a protocol for postpartum testing and research done on postpartum hypopara mothers as there seems to be a common theme of high calcium levels post birth but with limited understanding as to why this happens.”